Having a bad pain day. Had one following my follow up appointment last Wednesday as well. It’s my left hip/iliac. Wow, it’s killing-me, off-the-scale pain. I can only think of my good friend Tara, who had a fused hip all her life then an unsuccessful hip replacement when she finally got good health insurance. She was a schoolteacher – not exactly a sedentary job – but eventually had to stop. I could never imagine or appreciate the level of pain that hip caused her, and now I feel I can relate. My pain is off the charts, and if that was the only location it might be a tad more tolerable, but it’s more like a secondary location that’s now eclipsing the other severe pains. It needs to be radiated.

Needless to say, I’ve taken the meds I have and they’re no longer enough. I need a talk with the oncology pharmacists – they need to solve this pain problem. Even as the meds try to knock me out, the pain is uncontrolled. I’m on the verge of asking if my acupuncturist would do house calls. And I’m starting a book given to me last year by Naomi’s parents – Breakthrough Pain, by Shinzen Young. It’s on using meditation to divide and conquer pain.

I’m fighting to stay lucid. I wish I could drink coffee, but it tears up the tummy right now. Some sort of distraction would probably be best, I just don’t know what. TV has lost its novelty, and lack of alertness and concentration makes it difficult to read or do anything requiring attention to detail. Maybe a foot massage/reflexology tx would wake me up. I’m willing to try anything at this point. Espresso beans, maybe?

As regards the clinical trial team: they’ve contacted me this week and I’ve not felt well enough to break through my lack of rapport with Dr. Goldman to communicate. But I must, and maybe should even return for an “evaluation”, but since he told the internal med doc to get with my local oncologist to set up “some standard chemo regimen”, I’m assuming his mind is made up that I’m not going forward with the trial. And I’m fairly certain he’ll never cop to my condition being caused by the study drug. With Hubs out of town, the logistics of getting to UCLA are complicated. I can still drive, of course, but if I’m having a pain day, I’d rather not be hopped up on painkillers driving to LA.

Enter logistics queen Tara, who rightly points out I don’t have enough portable oxygen for more than a 4 hour trip to LA. So that’s out. she comes over, we have guacamole and chips, I email Dr. Goldman. He says get back on Tarceva, come in soon, I’m glad you don’t feel too sick. I’ll fill him in later. Meanwhile I break out into hives all over. Is it the aveda massage oil with wintergreen, which has methyl salicylate, an aspirin-like compound? I’m supposed to be allergic to aspirin, but I’ve used the oil before, albeit on small areas. My mom gave me a massage with it 2 nights in a row. How likely could it be the store- bought eggplant Parmesan or chicken piccata? ( Not likely?)

all night I go from Benadryl-induced sleep to pain induced wakefulness back to Benadryl induced inability to meet scheduling obligation to get X-ray for pulmonology appointment. I was trying to change that appointment to Friday, actually, when I go in for monthly Zometa tx (bone meds). Im losing grip of my organizational skills. Anyway, its a no go, I think have to go to a clinic 3 days in a row for something. PITA.

So today was something of a lost day, spent texting and keeping symptoms at bay. Hubs looks like he might be caught in another east coast weather system. We are supposed to take delivery of a new bed on Thursday (goodbye fancy formal dining room), and were invited to a superbowl party on Sunday (prolly won’t make it but never know). My mom has been here the past week and a half and is getting her groove back caregiving-wise… Poor thing. I feel bad for her but I kind of think it’s good for her mentally. She was starting to slip and I can’t help but think this unfortunate exercise is sharpening her mind. I know trying to recover is doing something to mine… Not sure what, but thank heavens for intelligent friends who keep at me. if I could just get the heart rate under control.

In a strange twist of fate, I came across an op-ed written by the neurosurgeon resident husband of my prior primary physician in Oakland. I chose her for her outstanding credentials (dartmouth, Yale, UCSF resident of the year), but only saw her twice Before I moved and she quit to do a post-doc fellowship at Stanford, where her huBby was doing his neurosurgeon residency. They are 36 now, and he has stage 4 lung cancer. He’s probably an ALKie, but I’m not sure. It just points to how one can be the most blessed person and be struck and leveled by this hateful disease, while the world’s criminals go about in perfect health, destroying the world, procreating, spreading more ugliness and pain. Dr. Kalanithi might have the chance to see a breakthrough in his lifetime, and I hoped I would, but that may no longer be a realistic wish for me. But you never know.

i hope tomorrow is a better day. Sorry about the typos – I wrote this on an iPad. Will fix later.

I’ve never been hospitalized, with the exception of outpatient surgical procedures and that sort of thing. Never been in an ambulance, and as expected, the ride made me very car sick. After 14 hours in ER (where I hurled if I so much as moved my eyeballs), I was transferred to ICU, in isolation. My reason for going was extreme shortness of breath and tachycardia, but I was admitted as a possible H1N1 candidate. Apparently there’s an epidemic in these parts…? The cultures returned negative two days later and I was downgraded from ICU, but I was on 5 liters of oxygen per hour through a mask, had a pleural effusion, and was completely winded with a heart rate of 140 after using a bedpan! The first few days were confined to bed, on a liquid diet and Lasix, a powerful diuretic. Life flashing before my eyes? Nope, just trying to get through each moment, mind basically blank. It was all so new and not fun.

I felt yukky. 3 days without brushing my teeth. A prominent community leader (maybe a pastor or choir director or ?) in the next room was resuscitated a couple of times but he passed away, and the floor was full of people, singing hymns in his room, chanting, crying. I was then moved into the oncology telemetric unit with a young psycho woman who I believe was generally bipolar and strung out on every pain med, suffering a flare of Crohn’s disease. This necessitated wearing an eye mask and Bose headphones with music turned on for 3 days, while people walking down the hallway could see right up my gown since the bed was practically in the hallway and no one would ever pull the curtain or door shut. She had 3/4 of the room – window, bathroom, etc, and my bed was basically an afterthought. I finally got a sponge bath on the 5th day and discovered shower caps that self-activate a warm, foamy shampoo that don’t require rinse-off. That was possibly the best thing about the entire stay! Later that day I was moved again at Hubby’s request, in with an elderly woman who had the runs as she had been doing chemo and was severely dehydrated, so she was on continuous fluid IV. Her family stayed over and they read the Bible out loud and did Hail Marys and counted rosary in spanish at all hours of the night and day. Obviously we didn’t know that prior to the move, but it was done, so whatever.

I managed to read a bit more of The Book Thief, but for the most part, the days were focused on a grueling schedule of no sleep and the constant barrage of disturbances – meal time, pill time, vitals check, breathing treatments, passing out from exhaustion, being dehydrated due to liquid restriction (1 liter/day), stomach torn up from all the new meds, bedpan, blood draws, IV meds, placing new IV’s (3x), financial/social work/supervisory compliance personnel badgering at all hours, residents and then attending physicians evaluating and not really confirming what was going on, being baffled by my exceedingly high heart rate, etc. and finally, visits from family and friends.

Eventually my sorta strange but likable internal med doc’s rotation was over and another doc took over. He was very kind and pragmatic and wanted me out of there before I caught some community-acquired infection… as he nervously eyed the roommate’s commode against the curtain. So he booted me with oxygen and prednisone and warned against crowds and crowded places.

Home is dark and quiet, and the beds don’t adjust. It’s been a slow process but I’m now able to VERY SLOWLY dress and get food without completely passing out. My oxygen drops to 85 and my heart rate goes to 120 but recovery can be expected. Pain has the effect of increasing the heart rate so that has to be strictly monitored. Still on liquid restriction, but I was counseled to eat more salt! I was forced to take these sodium pills in hospital and that was a drag.

Roommates from long ago have made their visits, and friends I’ve not seen in awhile. I wonder, when they see how thin I am, if they think I’m on my last leg, or if they think – she’ll get through this, she doesn’t seem like she’s dying yet. I don’t know where I am – am I dying, or am I just craving a fat steak and lobster? I mean, why am I eating potato chips and tapioca pudding at midnight (and watching documentaries about fashion and JD Salinger)? I’m supposed to be writing out the distribution of all my various and sundry non-valuables. Who gets the Bolex 16mm wind-up movie camera/manual editing equipment/projector? Whatever happened to my Canon Super 8mm? Who might want the films, I’m sure they’re compromised from not being stored properly? Actually I don’t have much – just stuff like that – vintage dishes, records, clothing, knickknacks, journals, books, films, a bit of jewelry, mountain bike, some prints. But these things hold meaning for me. They have little monetary but lots of sentimental value, which is why I still want to see the stuff in bins which have been in storage for years. Sigh.

I wonder if my acupuncturist knows a trick for slowing down one’s heart rate, besides meditation? I think I was supposed to see a pulmonologist this week, but scheduled it for next week. And, I’ve not contacted UCLA about my status. My exiting doc said he was advised by Dr. Goldman (UCLA) to get with my local onc to set up some sort of standard chemo. Which tells me he thinks I’m off the trial. Today I received instructions regarding setting up a CT scan in February, which would be the first 9 week confirmatory scan regarding progress or lack thereof. So Goldman hasn’t told anyone else his thoughts on the matter, it appears, or he’s waiting for me to set an exit interview.

First Friday of the new year. It’s been a balmy holiday season. A night wind is builds up. The house is redolent with the wonderful aroma of several comfort foods cooking at once. My sister came down for New Year’s and Mom has managed to break out of her prison with my brother. It’s nice for everyone involved, and Hubs thinks I should “pretend” to be sick more often, so they’ll come and cook a few days a month. Wouldn’t that be lovely, to just pretend I feel as badly as I do. I think I might be on the brink of death, but no one seems to see it that way. My sister just walked up to me and said, “You’re not doing too well are you? The kids (nephews & niece) need a babysitter tomorrow. I can keep cooking if they come here, otherwise I have to go to their house and not finish the cooking.” She told them her primary reason for coming was to help me out by cooking, but there’s never a time she’s come down when they haven’t asked her to babysit… and of course, they’re as oblivious and uncomprehending of my illness as most people. “Terminally ill” must be like a TV ailment or something.

Had Zometa (bone treatment) infusion today, fell asleep afterwards and missed acupuncture. Probably over-ambitious, two treatments in a day. Shortness of breath seems to be worsening. I can walk three steps before becoming completely winded. Makes no difference how slowly I walk or move – the smallest effort results in panting and gasping for air. My heart rate was 114, even after a few minutes of sitting. For comparison, there was a man in his 70’s at UCLA whose heart rate was 68. I hesitate to go the doctor yet again. I’ll get a chest X-ray, perhaps a new inhaler, another scolding from the trial doctor? The nurse practitioner I saw prior to receiving the second study dose had nothing to say, add, or otherwise illuminate the issue. Hubs had to wheel me from the treatment room to the car. I’ve had a few headaches today, and my shoulders are tense and sore. Blowing my nose yields blood clots mixed with mucus. Pericardial effusion? More pulmonary embolisms?

Am reading The Book Thief, which I bought 6 or 7 years ago. Not sure why I haven’t got round to reading it. It’s morbid and charming. I hear the movie was liked by critics but didn’t do well with audiences.

I am swirling in a vortex of ab, back, rib, hip, neck, and chest pain, some dizzy/lightheadedness, GI discomfort, distress by the loud talking and banging in the kitchen, even through headphones and music, stress from watching my Mom’s cognitive faculties slip… sorrow from knowing she feels even more alone in the world, because everyone is tied up with their own concerns – me with my spiraling illness and all that entails, a longterm house guest, and a morass of uncompleted responsibilities; my sister with being 450 miles away (out of sight, out of mind), Hubs with work/travel, his lately all-encompassing preoccupation with quads, and trying to teach a decade of life skills and turn his brother’s life around in as short a time as possible. In the end, it all falls on me and my incapacity to deal with all the situations at hand.

When I’m in so much pain – the usual state of affairs – my mind immediately shifts to thoughts of friends who have gone ahead. I go over what details they mention while waiting to pass on. Unfortunately, unless one is in the dying’s presence, asking how they feel, or the dying is dictating to a dedicated journaler, it’s pretty much impossible to get the their perspective – physical/emotional/intellectual/spiritual – as they go, in between periods of consciousness, of course. Caroline was the epitome of utilizing a dedicated journaler, and I am eternally grateful for the gift of sharing her journey towards (physical) death. This was made possible by having euthanasia as a choice, I think. It becomes more of a planned event, rather than an agonizing, Waiting-for-Godot death march. As personal, intimate, and vivid as the accounts of her final days are, it can only represent crumbs of everything she was experiencing. Her husband did a remarkable job, I think, of extrapolating the psychedelic world she swam in during that time.

I’ve been thinking and talking about death for the past 7.5 years. I don’t think I’ve felt as seriously about it for as long of a time as these past two months. It’a “This is for real” feeling. I could just asphyxiate in my sleep, or run out of breath on the driveway, or have some other unforeseen event.

Note: this post is incomplete but in light of recent events, I’ll put it up so the next posts don’t seem quite as abrupt…

Laurie Anderson – For a large and changing room. This piece feels very cinematic and architectural to me, very New York. Two things Naomi seemed to be. I wanted to play music for her, those last days. I felt so helpless, having to leave, knowing I would never see her again. I wanted just a few more hours. I never understood the rush. It accomplished nothing. Sigh.